Looking to the Future of Disease State Indexes


Tom Robinson, vice president of global access at JDRF, lists 3 pieces of advice for groups looking to create indexes for other conditions similar to the Type 1 Diabetes (T1D) Index.

Other health groups are looking to develop indexes similar to the Type 1 Diabetes (T1D) Index, said Tom Robinson, vice president of global access at JDRF.


Could indexes for other conditions be established, and what lessons from creating the T1D Index could be applied?

Well, I hope so. I've already had conversations with 3 other health groups who are looking at doing something similar. The concept of missing people, in particular, seems to have really resonated—like it's good epidemiology but it's also very personal, and often epidemiology fails to be personal. So, there's a lot of excitement around that.

There's kind of 3 pieces of advice that I'm giving people. The first is use modern data science. There is a world of difference between "I hacked this together on Excel" versus "this is coded up in a proper database....We could cross out all this sort of stuff. Use modern data science, it's worth it.

The second is definitely involve people with lived experience. People living with diabetes, their doctors and clinicians; involve scientists—that multidisciplinary approach made the index a lot better, and there are a lot of features of it that we wouldn't have without that involvement along the way.

And the third thing I should say is model the solutions as well as the problems. If you just describe the problem and admire the problem then people are going to say, "Well, so what? What do I do with this?" If you're going to go to all this effort, make sure you give them a clear, data-driven answer of where to look for what to do next.

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